As a result of 143 meetings with Members of Congress in Washington DC, and over 2,000 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne Fiscal Year 2020 (FY20) funding letters signatures.
79 members of Congress in total (59 in the House and 20 in the Senate) agreed to support our request sending a strong message of support behind Duchenne research, public health, drug development, and patient support initiatives. Both letters have bi-partisan support, which is really important for these efforts.
Please send thank you notes if your Senator(s) signed on. It is so important to show your appreciation for their support.
If you do not see your member signed on, remember, a signature is not the only measure of success. Success was achieved after you contacted your Members’ offices because you opened the door for more dialogue. We now have a touch point for future “asks” as well. As you know, we often have several action alerts on a variety of issues throughout the year. Also, without a signature they will still vote to approve the language in the final bill thanks to your outreach.
What happens next?
The timing for when the funding bill (known as appropriations) is finalized can often be unpredictable, they can be delayed for many reasons but they eventually get done. The good news is you have done the hard part already, ensuring the best chance for Duchenne related report language (download) is included in the bill to fund the agencies that impact Duchenne in the coming year. We will keep you posted when the bills pass through and are signed into law.
We appreciate that your time is precious, and we are grateful to everyone who made the trip to DC and to all those who advocated from home. This community is incredible and continues to lead the way in rare disease advocacy. We are so proud of the work you did and continue to do!